Hi Everyone, can I ask what people do for work? I work full time in a GP surgery as an administrator but I feel being more active would help with my fibro. I go to the gym at least once a week which has really improved my symptoms but just after a bit of advice and how your own experiences have helped you.Thanks
Danielle
Hi I worked as a Chartered Surveyor until I was nearly 40. I was constantly stressed, in pain & exhausted. The opportunity arose to relocate to the South West so I packed in surveying & since then I have tried a wide range of retail (standing all day), admin type work & holiday cottage cleaning. I found the long retail hours exhausting & being largely sedentary doing admin made my back pain a lot worse. Holiday cottage cleaning was too physically demanding over a 5/6 hour shift so I ended up in so much pain & exhausted that I packed it in.
I now do a bit of private domestic cleaning for some lovely clients. I restrict my cleans to 2-3 hours at a time & if I have two 2 hour cleans in a day I take a long lunch break in between. I have recently completed RHS exams & offer light gardening services which allows me to follow my passion for gardening & to work outside. Once again I restrict my hours to try to pace myself. I have hand picked my Clients & only work for people who I get on with really well & that understand my fibro limitations. I have built up my strength & stamina by slowly increasing my daily workload. Whilst my pain hasn't gone away it has certainly improved. It's not glamorous work but I have made good friends & I can charge more per hour self employed than working for someone else. The downside is I still have sleepless nights from Fibro & when I get 2-3 nights in a row I find physical work hard but at least it doesn't matter so much when brain fog strikes!
I hope you can find your way forward workwise & if being more physical helps go for it!
Thank you for adding your story. As i have said i am a specialist nurse in the NHS and it seems to consume every bit of my engery. Then when i am off i spend it sleeping to recover before starting the vicious circle all over again. I have been looking into doing a Bsc in Acupuncture. Hopefully, this would then give me the flexibility you now enjoy 😉
Thank you for your response it's really helpful. Cleaning was actually something I was thinking of but definitely couldn't do it full time so I will have a look into it. Well done you, sounds like you've dealt with and adapted really well.
Hi, I work in the NHS as a nurse part time but am also self employed as a Nordic walking instructor. I found nordic walking so beneficial for my back/joints and stamina.
I'm now coming up to 64 with better health than when I was diagnosed in my 30's with fibro.
walx.co.uk run all over the country. A fun way to keep fit or do outdoor exercise sessions for every level of fitness.
Take care.
Hi, thank you I will have a look into it. The fact you're in better health now says a lot so well done 
I work as a Respiratory Nurse Specialist in a large inner city hospital. I find that at the moment once i have worked all day i have little energy to do anything extra when i get home. My days off are spent recovering from the days I have been at work 😴😴
Helloam sorry to read about your fatigue but impressed about your ability to carry on.
iam on masters and training programme to become a specialist in respiratory medicine but i have been diagnosed with fibro.
please give me an idea about your typical work day and how you cope in such environments despite your illness and fatigue.and how you recover after a shift?
Top and bottom is i take regular analgesia usually 60mg codeine evry 4 hours and paracetamol alternating. I am on duloxetine 60mg BD and i go for acupuncture on a regular basis. Like i have said the 3 days i have off are spent sleeping and doing the minimum thta needs doing in the house. My husband is disabled so he does what he can. No two days at work are the same. We see inpatients with COPD and asthma and who need specialist review for being discharge home with oxygen and NIV. We also run nurse led clinics alongside consultants for asthma and interstitial lung disease. In addition to that we have a clinic for administration and assessment for anti -IL5 treatments for severe asthma patients with eosinophilic asthma. There is also a dedicated patient telephone line where patients can ring for advice. I work 7.5hrs a day our service runs from 8am to 5:30. Good luck with your masters 👍
thank you for your response.very helpful.it will help me puy things in perspective.am still in the denial stage.i pray all will be well with you and you continue to cope as much as possible.
Yes I feel like that too. I get to the weekends and just feel so tired.
Hi, I work as a support worker for adults with disabilities. Work quite long hours with one or two rest days between. Much the same for me, down time really is downtime! Totally exhausted and nothing left for anything else. House is always chaotic. Focus on bathroom kitchen areas to keep clean then my battery runs out so the rest of the house is always needing done. My iron must have a good few inches of dust on it 😂😂 actually can't remember when I last used it.
I was a nurse, and after my husband died (violent drunk) I found myself having to give up because of the shift pattern and the needs of two small children, as the CPTSD and the Fibro began to take their toll.
I then worked on First Aid at Work (lecturing and examining) and also took on Bank work for a retraining home and work facility for Disabled folk; but again it became too much.
I retrained in Therapeutic Massage; which I could do self-employed, and set my own hours.
When Arthritis set in, I trained again as a makeup artist, weddings, special occasions and occasionally Theatre and Film.
Being able to work and set my own hours, was good, because I had time for the kids after school. During holidays They would go to my parents.
Keeping as active as you can is vital with Fibro, especially as you approach the menopause, when you will need to address the thorny problem of possible Osteoporosis. I take a Vitamin D+ Calcium tablet each day to help keep the strength in my legs, as the body will steal Calcium from your bones if there is not enough in your diet. Getting a daily dose of daylight on your skin will also help as you can get Vit D from sunlight (I was told about 15 minutes a day was adequate) Walking as much as you can also helps to keep your bones strong. It isn't quite so important if you live in a hard water area (if your kettle furs up), but more important in a soft water area which has less calcium naturally.
Mushrooms are good for Vitamin D, as are cereals.
Cheers, Midori
Wow, how do you do all that, I work 12 hours a week and it's killing me, exercise makes my symptoms worse, tired all the time congratulations on all that you achieve
Thank you that's really kind. Just difficult to work out ways to help. I hope things get easier for you
I recently had to give up my job. I was only working 4 hours a day as an administrator but it made all my symptoms worse. I’m so upset that I couldn’t even manage that job. Stuck it out for 9 months hoping pain would improve but it just got worse. I’m looking for ideas for work that I could do. I feel useless.
Please don't feel that you are useless. I have spent so much time berating myself for not being able to win the fight with Fibromyalgia. But please be gentle with yourself. There have been so many times where i have cried at work because of the pain and fatigue and because i couldnt rememeber what i was saying when talking to colleagues or a patient. I feel it is easier to struggle on than be brave and say " you know what i cannot do this anymore, my body is saying no". Sending gentle hugs x
Thanks for your kind words. I just got back from the Musculoskeletal clinic. Couldn’t help crying when I talked about these feelings. Been referred to chronic pain clinic which they think will give me strategies to help to come to terms with my diagnosis x
I am so pleased that your local pain clinic sees patients with Fibromyalgia. Mine does not because they say " it needs a holistic approach".
So sorry to hear you feel like this and I really hope you find ways to help you. Don't feel like you're useless though, I know too well how it makes you feel and you can't do things the way you used to but give yourself a break and try not to be too hard on yourself x
I completely understand how you feel, my boss thinks I might be able to go back to normal hours, but me being honest, no chance. But don't feel useless, fibomyralgia is very difficult to live with
yes, my boss said to get in touch with them when I feel better because they would have me back. I just said thanks but know it’s highly unlikely. He was very kind but just shows how people don’t really don’t understand despite their good intentions.
Yes, for sure,
I work part time for FMA UK as office admin (16.5 hours) - I know that personally a more active job would not work for me. I get up and move around regularly to help relieve stiffness from sitting (usually to the printer /copier /kitchen)
That's the thing, everyone is different. I know that stress is a main trigger for my fibro and since going to gym my symptoms have really improved so it's finding the right job now
I am amazed any of you manage to work. Just goes to show how the severity of this disease varies in different people. Even light housework leave me in severe pain in my back and hips and sitting at a desk is just as bad. I used to love working and the independence it gave me. Plus the interaction with real people.
It’s a lonely life living with Fibro, I used to have loads of friends but over the last 15 years they’ve all dropped away apart from 2. I’ve now found myself in the position that if I need to go out I require a scooter. How did my life come to this? I can’t even get that in and out of the car myself. Currently looking in to finding out if I can have a hoist fitted. I keep reminding myself there’s people much worse than me out there.
Have you thought about a vehicle that you drive your chair in and out of?
I work 14 hours a week as a Client Services Assistant for a blind charity. I work in the office calling clients.
I actually ordered some ramps to try. Can’t afford a hoist £1095!! I’m hoping I can push it in and out. Had to use my scooter in Tesco yesterday and was treated like I was invisible.
Contact your local Social Services and ask for an Occupational Therapist Assessment. They can get all kinds of things for you, and might be worth the call, as many things come on Medical Loan, which means little to no outlay.
Cheers, Midori
I appreciate you asking this question, I find it helpful and I feel exactly the same! I used to be a teacher but the stress of the unorganized and prejudice senior managerment made me have constant flare ups, bullying and lack of support. It was the students that kept me going back everyday, until enough was enough. I've only just got the confidence and energy to volunteer. Take some time to find what you love if you can, enjoyment in your job is essential for your body, especially with fibro! Good Luck
I work in Clinical Research. It seems a lot of us work in the NHS! Thankfully my work is a mixture of being on your feet in clinic/desk work. I find I can only do a couple of days of "active" work and I'm worn out for the rest of the week. If I didn't also have "desk" work, I don't think I could do this job. I certainly couldn't be on my feet all week.The "Spoon Theory" definitely makes sense to me. It's on my quiet days where I have the energy for cookong/housework after work.
I used to have a huge commute too, that took it's toll. Much better now I don't have that stress.
I am a Tai Chi and QiGong instructor.
I can still work online a bit, but can no longer even get to work or anywhere else. In my case that's the jabs adding exhaustibility via MCAS, before that I could manage about 3h/d at work, and I've got all other symptoms besides that pretty well under control, so I do have developed a new quality of life in my garden, 30' table tennis every day, but can't walk or talk much (20').
I can relate to needing to move: I get a "postpostural Ache" from staying in one position, so I need to move while sitting, need special seating arrangements like an adjustable swiveable bar stool, or need to move around slowly. But a job with more movement might put pressure on moving too much, so lead to overdoing it, increasing pain & exhaustion.
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